Me and my cancer
By April Pierson-Keating
In December of 2014, I had a clear mammogram. In June of 2015, I felt a lump growing in my right breast. I thought it was nothing but a caffeine-induced lump or a fibrous tumor. My grandmother had had fibrous breasts, and I had successfully gotten rid of a lump previously by stopping my caffeine intake. Furthermore, I was in good shape; in fact, I had been an aerobics and yoga instructor since 1990 when my first son was born, and I had nursed my three children for at least a year each.
As I watched the lump grow, I truly thought there was nothing wrong with it. But at the same time, I was having new trouble with my back, pain in the sacrum and hips, sometimes excruciating. I started seeing a chiropractor but I wasn’t getting any better.
One night I went to a party with some dear friends and told them of my lump. They looked very suspicious and recommended me to get seen to immediately, which I did (thank goodness for friends, eh?). I saw a surgeon who happens to be one of the main doctors around here who does lumpectomies, and she said she wanted me to have the lump removed. I, being a health nut, who takes great care of myself and eats healthy, thought she was surely overreacting, and told her my theory about the caffeine. So, she let me wait another couple of weeks to try my theory out, and when I returned to her, the lump was still there.
This was early December of 2015. We scheduled surgery for me to have the lump removed before they let out for Christmas. At that time, I had no idea about tissue storage and what they do with it after they remove it, but if I had known, I would have tried to set it up so that my tissue could be used later for research. When I met Dr. Hankins through a mutual friend fairly early on but after my lumpectomy, he talked about making a xenograft mouse for me on which drugs could be tested. But since my breast lump was preserved in paraffin wax, there is no way for them to do research on it by using it to grow another tumor in a mouse. Circulating tumor cells in the blood is a big topic now, but I’m not sure how well they’ve worked out the bugs yet.
My cancer had metastasized to the bone, specifically my spine and sacrum, upon diagnosis. I lived for a couple of years pain-free, and because of this, I neglected my own care for the future. Dr. Hankins told me what has to be done, but I was feeling so good I didn’t feel the urgency that I feel now every day. I wake up in pain every day. Luckily, I have found kratom, which manages my pain better than all the drugs they have in their arsenal. I’ve tried them all. All they do is make me sleepy and stupid. Kratom wins that argument hands down.
But Kratom is a temporary solution. Each dose lasts about 3-4 hours and I have to take it again. I have to make sure I have some with me everywhere I go. Also, I can’t sleep lying down anymore, as the spinal compression presses on nerves that run tingling and pain down my arms when I lie flat. I am an avid yoga practitioner, but some movements, especially the ones that have me bend in the middle, press in nerves in my sacrum and send tingling down my legs. My right thigh is numb on top now. For the longest time, I had no trouble doing yoga, but now I have to be very careful. If I overdo it, I can pay for it for days. It’s the same as walking. This is ironic because I have to stay in shape if I have any chance of fighting this.
I get a lot of questions like, “How long do you have to take therapy?” – AS IF I will ever be done. I usually reply, “Until I die.” I am probably too direct for most people, but I believe in looking at things in the face and speaking truthfully about hard issues. My family and friends know this all too well.
I know my condition is hard on my husband and partner and my 3 kids, but it probably hits my young son the hardest. He has to witness me crying and yelling about the pain during the night, standing there like a ghost in the dark, asking me if he can help. Sadly, he can’t. He has to watch helplessly while his mother slides down the rabbit hole, living in torture (at times) until I die. I have spoken openly about dying a lot because my mother did, so it was familiar and not uncomfortable for me, but during an intimate conversation with my 20-year old son (which doesn’t often happen) he told me how badly my constant “death talk” affects him, so I have toned it down.
When I started treatments in February of 2016, I felt good. I immediately got two other opinions and built myself a team of doctors, one at MaGee Womens’ in Pittsburgh and one at Cleveland Clinic. The one at Cleveland Clinic told me at my first appointment that “we can reverse it.” Now I think he was bullshitting me. It’s true, my numbers (CA 27-29) did go down immediately upon treatment, but over the years they have slid back up. The CC doc kind of dropped me after about a year and a half. I am still in touch with my doc in Pittsburgh, who is very fast and efficient. He even emails me. But I still feel like he’s on auto-pilot. He tells me there are so many things we can do for you, but each new thing I try does nothing or is only of temporary help.
Now, just over three years since diagnosis, I have more bad days than good. I have been a high-energy, creative, go-getter for so long now that lying around for a whole day feels really awful, but sometimes that’s how I have to do it. I have spent way too much time on my personal pursuit of trying to save the environment, which as you know is a hopeless case, especially now, and neglected my own health for too long.
Recently, I started paying attention to my health, doing some of the deep research I should have been doing all along. Using the internet and suggestions from people I have talked to, I have come up with some really “alt” approaches, found clinics all over (especially in Mexico) that offer alternative treatments, cancer survivors who offer hope. I have sent medical records all over and talked to people who do different types of procedures. I have looked for trials and signed up for newsletters. Most of the trials have turned me down because I didn’t fulfill one or more of their categories – I was too late and the trial was closed, it had been too long since my diagnosis, they don’t take people with the bone-only disease, etc.
That last one is now moot since I developed a small lung metastasis which was found last December on a PET scan. It was “only” 6 mm in diameter (their best estimate) so it was hard for me to get them to admit I had disease progression. That’s a whole other problem. If you have bone-only mets, even though your numbers go up, and even if you get a new bone met, they don’t see it as progression, which means they don’t scale up your treatments. It’s really unfair.
The lung met has also caused me some distress, since it affects my breathing and activities. I took a walk one cold day and could not make it to my destination without stopping to get more oxygen. I bent over and gasped for air; I felt so breathless, I almost panicked. We were at a public event, and the thought of being taken away in an ambulance or on life flight was terribly distressing. After about 5 minutes (a long time when you can’t get enough air!) – I finally felt better and someone appeared to help me get to where I was going. This is disturbing to me since I have been in such good shape all my life.
So, my primary oncologist (my local guy) finally admitted to me that my disease had progressed. My Pittsburgh guy recommended more hormone therapy. So now I take shots in the butt to block estrogen. These will no doubt affect many things. I was so exhausted yesterday I felt like I was coming down with something. But today I feel good (relatively). One of the shots, though, has presented long-term problems in many patients, so I am going to drop that one. It seems every “solution” they try fails. But they never tell you that at the beginning. Their job is to give you hope. False hope, if you ask me. Because stage IV is a whole different ballgame.
So, what are they doing about my lung met? Nothing, really. When I tell my doctor my symptoms, he usually nods his head and writes something down, but never offers me much. Sometimes it feels like I’m talking to a wall.
Pain control is another huge issue. I have tried a lot of different things. Mostly what they have to give you are opioids or anti-depressants. I have tried both. Really, the opioids are not for daytime use, unless you want to languish in your chair all day, eyes half-closed. That’s not for me. Luckily, I found a natural solution. Kratom has literally changed my life. I buy it online and mix the powder with honey or preserves and take it a teaspoonful at a time until the pain subsides. It is amazing stuff. It works better than any opioid I have ever tried.
So you can tell I am a natural healing kind of girl. But my husband is wary of claims or solutions that aren’t based in science or don’t have statistics to back them up. I have tried to explain to him that the system is so corrupt there is no way to get accurate information on some of this stuff. Because studies have not been done, there is no way to quantify results. I am driving in the dark.
But not alone. I was introduced to Dr. David Hankins and International Cancer Alliance for Research and Education (ICARE) very early in my diagnosis by a mutual friend. Thank God for Dr. Hankins! He is a cancer researcher who has a vision for how we should attack cancer that is “revolutionary,”; in other words, no one is doing it. In this vision, there is a triad of patient(s), doctor(s), and researcher(s) who work together to find solutions for patients’ cancer, and fast. One of the most important aspects to this approach is the recognition of the need to HURRY. This is especially true for stage IV people. 80% of us die within 5 years. I passed the 3-year mark last December.
The ICARE approach is cooperative, which is really difficult to get done in today’s medical atmosphere. People want to “own” solutions. They want patents. They want profits or at least recognition. This approach takes too long. Did you know it takes at least 7 years and $200,000 to do ONE trial? We stage IV people don’t have that long. And only 5% of cancer research money goes to funding research on metastatic disease. So we are left out in the cold.
Except for ICARE. Every time I talk to Dr. Hankins, I get renewed feelings of hope and inspiration. I want to work harder on finding a cure, yes – a cure – for my cancer. David has worked tirelessly to find options for me and many others, on his own time. He is always there for me, like no one else. And I’m not paying him a cent.
I want ICARE to grow and flourish because it offers patients like me real hope, not false hope. Together, we look for options for me, assess them, and set about getting them to me. This is not easy, for the reasons already stated, especially the money.
This is why we need to fund ICARE. People like me need options. That is how ICARE works. It goes beyond the standard of care (which are only keeping me alive so much longer but don’t offer me a cure), beyond trials (though these are included in my list of options), into cutting edge approaches that are not yet mainstream. Dr. Hankins networks with doctors and researchers, and alerts me to new research and inspires me to try to get these folks to work with me. The system is very closed right now, and that is terrible for someone in my position.
In the end, it is up to each person to make a life. We all die alone in the end. But as long as I have life, I don’t have to do this alone. I have ICARE and the hope it provides. I want every cancer patient to have options, more than we do now. Cancer treatment today is medieval, really. Sometimes it’s of no more benefit than a bloodletting. Some people die from chemo. Chemo can’t save me. Only the ICARE approach has a chance.
The term “cancer survivor” is a misnomer. I will not survive this. Not the way the medical establishment operates now. For now, I call myself a “thriver,” meaning I live with metastatic breast cancer. But cancer is greedy and it waits for no one. I am in a hurry to find a solution that will benefit me and all the people in my life touched by my cancer. I hope you will join us soon on our journey to open up options for stage IV cancer thrivers. Because we only have so much time.